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Child Health Profile

Integration of NBS with other MCH Systems: A Sourcebook & Tool for Assessment & Planning EHDI Conference February 2004 D eborah Linzer, MS. Child Health Profile. Goal is to develop a unified record on every child to: capture accurate information in a timely manner

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Child Health Profile

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  1. Integration of NBS with other MCH Systems: A Sourcebook & Tool for Assessment & PlanningEHDI ConferenceFebruary 2004Deborah Linzer, MS

  2. Child Health Profile • Goal is to develop a unified record on every child to: • capture accurate information in a timely manner • support decision-making at the point of service • support program needs • Integrating information systems so that the information user has access to complete & accurate information about a child, it is anticipated that child health can be improved.

  3. Newborn Screening Task Force Report • Vol. 106, Aug. 2000, Suppl. • Approved by: • AAP Board of Directors • AAP Committee on Genetics • AAP Committee on Fetus & Newborn • Medical Home Initiatives for Children with Special Needs - Project Advisory Committee • AAP Task Force on Newborn & Infant Hearing

  4. “Improved coordination and integration of information systems is needed.” - Task Force for Newborn Screening, 2000

  5. State Planning Grants • Integration of NBS programs with other points of early identification of childrenborn with heritable & congenital conditions • Integration points of early identification with systems of early intervention

  6. State Planning Grants • Retrieval of NBS information by medical home • Public health agencies collaborating • Public health agencies & private sector collaborating • Community-based child health profile

  7. Partnership • MCHB  PHII/All Kids Count • Describe States demonstrating best practices in the integration of newborn blood spot screening programs with other public health programs & their information systems • newborn dried blood spot screening • early hearing detection & intervention • immunizations • vital registration

  8. Methodology • Reviewed 1999, 2000 SPRANS grant applications (n=17) • Selected 7 as representative of broad vision & strong approach(CO, IA, MI, MO, OR, RI, UT) • Interview protocol derived from MIS literature & experience on critical success factors • Conducted 2-day site visits • Synthesized discussions & common themes

  9. Integration Sourcebook • Partnership • HRSA/MCHB • PHII/All Kids Count • Target: • State Public Health Teams • Focus • Nine Key Elements • Best Practices • Two Case Studies • Lessons Learned

  10. Leadership Governance Management Stakeholder Involvement Policy Support Organizational & Technical Strategies Technical Support & Coordination Financial Support & Management Evaluation Key Elements

  11. Case Studies • Mature Project • Captures the elements that made them successful • Discusses how they put best practices into action • Summarizes their organizational, personal talents, and systems strategies • Emerging Project • Summarizes how best practices can influence their success • Discusses their goals and strategies

  12. Lessons Learned • Data are for sharing • Communication is critical • Change is hard • Let public health needs drive technology • Stay the course

  13. Tool for Assessment & Planning • To help Program Managers • Characterize a strategic vision • Assess organizational readiness • Determine where you stand in the project life cycle • Question data integration needs and strategies

  14. Approach • Best used in early stages • Focused on planning and accountability • Integrated into team’s project management strategy • Used to seek input from key stakeholders that affect the project’s planning and early implementation stages

  15. Organization • Questionnaire • Nine key elements • Based on information systems literature • Best practices demonstrated by State & local governments • Integration Planning Matrix • Sample table to assist public health teams • Future goals • Strategies • Dedicated staff

  16. Partnership HRSA/MCHB PHII/All Kids Count Target State Public Health Teams Companion to Integration Sourcebook Focus on Understanding Best practices Organizational readiness Additional strategies Accomplishments & action steps Tool for Assessment & Planning

  17. Questionnaire

  18. Questionnaire

  19. Integration Planning Matrix

  20. All Kids Count Public Health Informatics Institute The Sourcebook& Tool are available atwww.phii.org

  21. National Newborn Screening & Genetics Resource Center Information on MCHB’s Initiative to Integrate Newborn Screening Systems is available at: http://genes-r-us.uthscsa.edu

  22. Program Contact Deborah Linzer, MS Health Resources & Services Administration Maternal & Child Health Bureau 301-443-1080 dlinzer@hrsa.gov http://mchb.hrsa.gov/

  23. Newborn Screening Improves & Saves Lives

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